the blood glucose monitoring communication...

The Blood Glucose MonitoringCommunication QuestionnaireAn instrument to measure affect specific to blood glucose monitoring

KOREY K. HOOD, PHD1

DEBORAH A. BUTLER, MSW1

LISA K. VOLKENING, BA1

BARBARA J. ANDERSON, PHD2

LORI M.B. LAFFEL, MD, MPH1

OBJECTIVE — The aim of this study was to present the psychometric properties of a new toolfor evaluating affective response to blood glucose monitoring (BGM) in youths with type 1diabetes and their parents.

RESEARCHDESIGNANDMETHODS — Study participants included 153 youths withtype 1 diabetes and their parents. Each youth and parent completed the Blood Glucose Moni-toring Communication (BGMC) questionnaire, Diabetes Family Conflict Scale, and PediatricQuality of Life Inventory. Statistical analyses evaluated the psychometric properties of the BGMCquestionnaires and their association with glycemic outcomes.

RESULTS — Youth and parent BGMC questionnaires had acceptable internal consistency(youth, � � 0.77; parent, � � 0.82) and 1-year test–retest reliability (youth, r � 0.60; parent,r � 0.80). Higher BGMC questionnaire scores (indicating more negative affect) showed a strongassociation with higher levels of diabetes-specific family conflict (youth, r � 0.33; parent, r �0.44) and poorer health-related psychosocial quality of life (youth, r � �0.50; parent, r ��0.42). Higher BGMC questionnaire scores were also associated with poorer glycemic control(youth, r � 0.28; parent, r � 0.20), even when the effects of diabetes-specific family conflict andpsychosocial quality of life were controlled. Youths with BGMC questionnaire scores in theupper quartile had A1c values 1 percentage point higher (9.1%) than youths with scores in thelowest quartile (8.0%).

CONCLUSIONS — The BGMC questionnaires have strong psychometric properties and areconvenient measures of affect specific to BGM. Further, BGM affect is associated with glycemicoutcomes and may provide a unique contribution to factors associated with glycemic control inyouths.

Diabetes Care 27:2610–2615, 2004

During the past two decades, bloodglucose monitoring (BGM) hasbeen established as an important

component of type 1 diabetes manage-ment. Findings from the Diabetes Controland Complications Trial and other studiesstress the necessity of BGM for intensive

treatment of diabetes, largely because ofthe relationship between BGM and glyce-mic outcomes in populations with type 1and type 2 diabetes and the link betweenhyperglycemia and long-term complica-tions (1–5). Further, in pediatric and ad-olescent patients with type 1 diabetes, a

strong association exists between adher-ence to BGM and glycemic control; ahigher frequency of BGM is associatedwith lower A1c levels (6–8). Thus, it isnot surprising that the American DiabetesAssociation, in its clinical practice guide-lines (9), stresses the importance of fre-quent BGM for intensive treatment ofdiabetes.

Despite an emphasis on intensive di-abetes management, which includes fre-quent BGM, glycemic control remainssuboptimal in pediatric and adolescentpopulations. Although biological and so-cial changes in youths impact glycemiccontrol in direct and in indirect ways(10), the demands of diabetes manage-ment can promote negative feelings infamily members. Diabetes-specific familyconflict is consistently identified as hav-ing a negative impact on adherence to di-abetes tasks and glycemic outcomes (11–13) and may arise from either parentalperception of inadequate monitoring fre-quency or the child’s inability to achieveor maintain near-normal blood glucoselevels. Thus, conflict around BGM, suchas parental nagging or criticism, mayserve to promote negative feelings in theyouth directed at diabetes managementtasks and specifically at BGM. Because op-timal glycemic control is often the goal forfamilies, failure to meet the target range ofblood glucose levels may also serve topromote feelings of disappointment,guilt, or anger in the youth and subse-quently modify adherence to BGM. Thiscollection of difficulties resulting fromnegative feelings about diabetes manage-ment may further serve to promote pooradherence (11–13) and psychologicalproblems (e.g., depression) (14–16).

Therefore, we developed an instru-ment to evaluate affect specific to BGM forboth youths and their parents. This in-strument is based on clinical and researchfindings related to the treatment of type 1diabetes in youths and their families. Inthis report, we present the psychometricproperties of this new instrument andprovide results related to how this new

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From the 1Pediatric and Adolescent Unit, Genetics and Epidemiology Section, Behavioral Research andMental Health Section, Joslin Diabetes Center, Harvard Medical School, Boston, Massachusetts; and the2Baylor College of Medicine, Texas Children’s Hospital, Houston, Texas.

Address correspondence and reprint requests to Lori Laffel, MD, MPH, Pediatric & Adolescent Unit,Joslin Diabetes Center, 1 Joslin Place, Boston, MA 02215. E-mail: [email protected].

Received for publication 14 April 2004 and accepted in revised form 20 July 2004.Abbreviations: BGM, blood glucose monitoring; BGMC, Blood Glucose Monitoring Communication;

PedsQL, Pediatric Quality of Life Inventory; SES, socioeconomic status.A table elsewhere in this issue shows conventional and Systeme International (SI) units and conversion

factors for many substances.© 2004 by the American Diabetes Association.

E p i d e m i o l o g y / H e a l t h S e r v i c e s / P s y c h o s o c i a l R e s e a r c hO R I G I N A L A R T I C L E

2610 DIABETES CARE, VOLUME 27, NUMBER 11, NOVEMBER 2004

instrument correlates with individual,family, and diabetes-specific variables re-lated to glycemic outcomes in youth.

RESEARCH DESIGN ANDMETHODS — Study part ic ipantswere 153 youths and their parents whowere receiving care at a tertiary pediatricdiabetes center from a multidisciplinaryteam. Eligibility criteria included type 1diabetes diagnosed according to Ameri-can Diabetes Association practice guide-lines (9), age 8–16 years, duration of type1 diabetes of �9 months, at least threeoutpatient visits in the past 2 years (or atleast two visits if the patient had type 1diabetes �1 year), residence in the north-eastern U.S., and fluency in English.Exclusion criteria included major psychi-atric or neurocognitive disorder (e.g., bi-polar disorder, severe eating disorder, ormental retardation), significant medicaldisease other than type 1 diabetes ortreated thyroid disorders or celiac disease,and unstable living environment (e.g.,Department of Social Services or Depart-ment of Youth Services involvement).

Over a 4-month period, 174 familiesfulfilling these criteria were sequentiallyapproached, and 154 (89%) agreed to

participate. One patient was subsequentlyremoved after further chart review indi-cated failure to meet all inclusion criteria.Of the 20 families who declined partici-pation, 16 reported no time or interest instudy participation, 2 reported familyproblems, 1 reported privacy concerns,and 1 family was in the process of moving.The Joslin Diabetes Center Committee onHuman Studies approved the protocol. Aresearch assistant obtained written in-formed consent from participating par-ents/guardians and assent from theyouths and then administered the ques-tionnaires in the waiting room of the pe-diatric and adolescent clinic.

Blood Glucose MonitoringCommunication QuestionnaireThe Blood Glucose Monitoring Commu-nication (BGMC) questionnaires were de-signed to evaluate affective responses toBGM results experienced by youths andtheir parents (questionnaires displayed inTable 1). Development of the BGMCquestionnaires was driven by researchand clinical reports of family experiencesaround BGM (17,18). In addition, infor-mal focus group sessions were conductedto identify specific feelings related to

BGM. Some of the focus groups werecomposed of youths and parents together;others included only parents or onlyyouths. Further, members of a multidis-ciplinary diabetes team reviewed initialdrafts of the BGMC questionnaires, andtheir recommendations were used to re-fine the final versions. When completingthe BGMC questionnaire, youths areasked to report their emotional responsesto high and low blood glucose levels.Likewise, parents are asked to report theirlevel of affect in these situations. TheBGMC questionnaires have eight itemswith corresponding responses on a three-point Likert scale (1 � almost never, 2 �sometimes, 3 � almost always). Totalscores can range from a minimum of 8(indicating no negative affect) to 24 (indi-cating a high level of negative affect). Ac-cording to readability statistics (Flesch-Kincaid), the BGMC questionnaires readat a grade level of 4.2. Length of time tocomplete the BGMC questionnaires is �5min.

Diabetes Family Conflict ScaleEach child and a parent completed an up-dated version of the Diabetes Family Con-flict Scale (19) to evaluate the degree offamily conflict in 19 management tasks.This questionnaire has excellent reliabil-ity and internal validity for both child andparent responses (19,20). Level of familyconflict related to diabetes-specific tasksis rated on a three-point scale (1 � neverargue, 2 � sometimes argue, 3 � alwaysargue). We chose, however, to sum thenumber of items in which any level ofconflict was acknowledged (2 or 3), be-cause the impact of social desirability(from self-report in a clinic setting) on re-sponses makes it difficult to distinguish ameaningful difference between familiesreporting responses of 2 and 3. In addi-tion, there were no differences in out-comes between the two scoring methods.This questionnaire is completed in �5min.

Pediatric Quality of Life InventoryThe Pediatric Quality of Life Inventory(PedsQL) evaluates youth and parent per-ceptions of the child’s health-related qual-ity of life. The PedsQL has demonstratedgood reliability and validity (21). ThePedsQL consists of 23 items scored on afive-point Likert scale (0 � never a prob-lem, 1 � almost never a problem, 2 �sometimes a problem, 3 � often a prob-

Table 1—BGMC questionnaires

Almostnever Sometimes

Almostalways

Youth BGMC questionnaireDuring the past week

When my blood sugar is high, I get upset thinking thatI will be blamed for something I ate.

1 2 3

When my blood sugar is high, I feel scared. 1 2 3When my blood sugar is high, I feel frustrated. 1 2 3I am upset when I have a high blood sugar. 1 2 3I feel angry when my blood sugar is high. 1 2 3I feel frustrated when I have a low blood sugar. 1 2 3When my blood sugar is high, I feel guilty. 1 2 3When my blood sugar is low, I feel scared. 1 2 3

Parent BGMC questionnaireDuring the past week

When my child’s blood sugar is high, I get upsetthinking that my child ate sweets (candy bar, icecream, etc).

1 2 3

When my child’s blood sugar is high, I feel scared. 1 2 3When my child’s blood sugar is high, I feel frustrated. 1 2 3I am upset when my child has a high blood sugar. 1 2 3I feel angry when my child’s blood sugar is high. 1 2 3I feel frustrated when my child has a low blood sugar. 1 2 3When my child’s blood sugar is high, I feel guilty. 1 2 3When my child’s blood sugar is low, I feel scared. 1 2 3

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DIABETES CARE, VOLUME 27, NUMBER 11, NOVEMBER 2004 2611

lem, 4 � almost always a problem). Re-sponses were scored as follows: 0 scoredas 100, 1 as 75, 2 as 50, 3 as 25, and 4 as0. Total quality-of-life score and subscalescores result from averaging all items. Thepsychosocial subscale (15 items), whichencompasses emotional, school, and so-cial quality of life, was used in this study.Time to complete the entire questionnaireis �5 min.

Glycemic controlOn the day that families completed ques-tionnaires in the clinic, each patient pro-vided blood for A1c, measured by high-performance liquid chromatography(reference range 4.0–6.0%; Tosoh 2.2;Tosoh Bioscience, South San Francisco,CA).

Statistical analysisStatistical analysis was performed withSAS version 8.02 for Windows (SAS Insti-

tute, Cary, NC). Means � SD are pre-sented unless otherwise indicated. Thepsychometric properties of the BGMCquestionnaires were examined by Pearsonbivariate correlations and Cronbach �.Independent t tests compared total scoredifferences on the BGMC questionnairesacross dichotomous variables (e.g., sex).Pearson bivariate correlations were usedto examine the associations between theBGMC questionnaires and continuousvariables (e.g., age, duration of type 1 di-abetes, and A1c values).

RESULTS

Participant characteristicsTable 2 presents demographic and diabe-tes-related characteristics of the sample.The youths were 56% female and had anage of 12.9 � 2.3 years (means � SD).This sample was mostly white (90%), hada duration of type 1 diabetes of 6.4 � 3.6

years, and had A1c values of 8.4 � 1.4%.The parents/guardians who completedthe parent BGMC questionnaire weremothers (79%), fathers (20%), and “oth-ers” (1%).

BGMC questionnaire scoresThe average youth score on the BGMCquestionnaire was 12.17 � 3.08 (range8–22), with higher scores reflecting theexperience of more negative affect. Theaverage parent BGMC questionnairescore was 13.68 � 3.32 (range 8–23).Total scores on the BGMC questionnairesfor youths and parents were not signifi-cantly correlated with youth’s age, dura-tion of type 1 diabetes, or reportedsocioeconomic status (SES). However,there was a significant difference betweenmales and females on the youth BGMCquestionnaire [t (151) � 2.11, P � 0.04].The group means � SD for female partic-ipants (12.63 � 3.20) was higher than thethat for male participants (11.58 � 2.83).In addition, youths of lower SES (i.e.,Hollingshead categories of semiskilled,unskilled, and unemployed workers) hadhigher BGMC questionnaire scores thanyouths of higher SES [t (151) � �2.19,P � 0.03]. Youths of lower SES obtained aBGMC questionnaire score of 13.18 �3.37, compared with a score of 11.88 �2.94 for youths of higher SES. Finally,parents of lower SES had higher BGMCquestionnaire scores than parents ofhigher SES [t (151) � �3.32, P � 0.002].Parents of lower SES obtained a BGMCquestionnaire score of 15.3 � 3.70, com-pared with a score of 13.22 � 3.06 forparents of higher SES.

Youth and parent agreementThe youth and parent BGMC question-naire scores were correlated (r � 0.32,P � 0.0001), indicating similar responsepatterns for youth and their parents.However, parent BGMC questionnairescores were significantly higher thanyouth scores [t (152) � 5.00, P �0.0001], indicating that parents per-ceived a slightly higher level of negativeBGM affect than did their children.

Internal consistencyRates of internal consistency (Cronbach�) for the BGMC questionnaires were cal-culated: youth BGMC questionnaire, � �0.77; parent BGMC questionnaire, � �0.82. These rates demonstrated accept-able internal reliability for both youths

Table 2—Participant characteristics

Youth

n 153Age (years) 12.9 � 2.3Sex (% female) 56Ethnicity

White/non-Hispanic white 138 (90)Black/African American 4 (3)Hispanic American 4 (3)Native American 2 (1)Asian American 1 (�1)Other 4 (3)

SES* 3.23 � 1.56Family status

Two-parent family 123 (81)One-parent family 29 (19)

Type 1 diabetes duration (years) 6.4 � 3.6HbA1c (%) 8.4 � 1.4Insulin (units � kg�1 � day�1) 1.0 � 0.3BGM

One time per day 4 (3)Two times per day 13 (9)Three times per day 26 (17)Four times per day 83 (54)Five or more times per day 27 (18)

Insulin injectionsTwo per day 23 (15)Three per day 78 (51)Four or more per day 16 (10)

Pump 36 (24)

Data are means �SD or n (%). *Hollingshead index. Scores range from 1 to 6: 1 � major professional (e.g.,physician, lawyer); 2 � minor professional (e.g., nurse); 3 � skilled worker (e.g., administrative personnel);4 � semi-skilled worker (e.g., data entry personnel); 5 � unskilled worker (e.g., truck driver); and 6 �unemployed/retired/student.

Blood glucose monitoring and affect


and parents because each of the eightitems consistently contributed to the totalBGMC questionnaire score.

Test-retest reliabilityA subsample of 52 families was reevalu-ated �1 year later (13.3 � 1.89 months),during which time the families continuedto receive routine multidisciplinary dia-betes care at the same clinic. Pearson bi-variate correlations for youth and parentBGMC questionnaire scores demon-strated stability across the period of 1year: for youth BGMC, r � 0.60, P �0.0001; for parent BGMC, r � 0.80, P �0.0001.

Concurrent validityConcurrent validity was evaluated bycomparing responses on the BGMC ques-tionnaires to the Diabetes Family ConflictScale and the PedsQL psychosocial sub-scale. The amount of negative affectaround BGM was hypothesized to be as-sociated with diabetes-specific familyconflict, because BGM is a fundamentalaspect of type 1 diabetes managementinvolving diabetes-specific family interac-tions. Further, the inherent wide fluctua-tions of blood glucose levels in youthswith type 1 diabetes may be fertile groundfor family conflict and “blame and shame”(22). Youth and parent scores on the BGMCquestionnaires were positively correlatedwith scores on the Diabetes Family Con-flict Scale: youth, r � 0.33, P � 0.0001;parent, r � 0.44, P � 0.0001. More neg-ative affect was associated with more dia-betes-specific family conflict reported byboth youths and parents.

Negative affect around BGM was alsohypothesized to be associated withhealth-related quality of life. Specifically,we expected to find that youths who ex-perienced negative feelings about diabe-tes tasks would perceive themselves ashaving poorer health-related psychoso-cial quality of life. For youths, scores onthe BGMC questionnaire were negativelycorrelated with scores on the psychoso-cial subscale of the PedsQL (r � �0.50,P � 0.0001). More negative youth affectwas significantly associated with lowerpsychosocial health-related quality of life.Likewise, parent scores on the BGMCquestionnaire were negatively correlatedwith the parent proxy report of theyouth’s psychosocial quality of life (r ��0.42, P � 0.0001).

Relationship between BGM affectand glycemic controlTo examine the association betweenscores on the BGMC questionnaires andglycemic control (A1c values), Pearsonbivariate correlations were calculated. Foryouths, scores on the BGMC question-naire were significantly correlated withA1c (r � 0.28, P � 0.0005). More nega-tive BGM affect was associated withhigher A1c values. Youth with BGMC sur-vey scores in the upper quartile had A1cvalues �1 percentage point higher(9.1%) than youths with scores in thelowest quartile (8.0%), whereas youthswith scores in the interquartile range hadintermediate A1c values (Fig. 1). For par-ents, more reported negative BGM affectwas also associated with higher youth A1cvalues (r � 0.20, P � 0.013). Scores onthe BGMC questionnaires were not corre-lated with frequency of BGM.

Next, partial correlations were per-formed to better understand the associa-tion between youth-reported BGM affectand glycemic control by controlling forthe effects of youth-reported diabetes-specific family conflict and youth-reported psychosocial quality of life. Asreported previously, the correlation be-tween youth-reported BGM affect andglycemic control was significant (r �0.28, P � 0.0005). Diabetes-specific fam-ily conflict provided a partial explanationfor the association between youth-reported BGM affect and glycemic control(partial r � 0.20, P � 0.016). The samewas true for youth-reported psychosocialquality of life (partial r � 0.23, P �0.004). In both cases, although r de-creased slightly when the effect of thethird variable (i.e., family conflict or qual-

ity of life) was controlled, the relationshipbetween A1c and BGM affect remainedsignificant.

CONCLUSIONS — Our initial inves-tigations reveal that the BGMC question-naires are reliable, valid, and stableindicators of affective response to BGM.Both the youth and parent BGMC ques-tionnaires show strong internal consis-tency and remain stable indicators ofBGM affect across a period of 1 year. Fur-ther, the construct of BGM affect is asso-ciated with diabetes-specific familyconflict, health-related quality of life, andglycemic outcomes, for both youths andparents. Finally, among youths, BGM af-fect is significantly associated with glyce-mic outcomes and appears to provide aunique contribution to the collection offactors related to glycemic control inyouth.

Management of type 1 diabetes inyouths is a family process. Many aspectsof family functioning impact type 1 dia-betes management and, vice versa, type 1diabetes management impacts familyfunctioning. It appears that higher levelsof youth-reported and parent-reportedBGM affects are associated with poorerglycemic outcomes. However, because ofthe correlative nature of our data, it is notpossible to establish a causal associationbetween these two variables. In fact, itis possible that the direction of this asso-ciation may go either way: negative affectleading to poorer glycemic outcomes orout-of-range blood glucose meter read-ings and elevated A1c values caused bysuboptimal glycemic control, leadingto increased negative affect. For theformer case, we propose two potential

Figure 1—Youths with BGMC questionnaire scores in the upper quartile had A1c values 1percentage point higher (9.1%) than youths with scores in the lowest quartile (8.0%), whereasyouths with scores in the interquartile range had intermediate A1c values (8.3%).

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pathways from BGM affect to poorer gly-cemic control.

First, the significant correlation be-tween BGM affect and diabetes-specificfamily conflict indicates that these factorsare closely related. We theorize thatyouths with type 1 diabetes and their fam-ilies struggle to meet the goals, unrealisticat times, of optimal control of blood glu-cose levels. Youths and families are “setup” to fail because it is unrealistic to ex-pect youths to meet these goals consis-tently or perfectly. Consequently, feelingsof anger, disappointment, or guilt mayfollow. This negative affect may then carryover into the family relationship arounddiabetes management, promoting morefamily conflict and ultimately leading topoorer glycemic control (11).

A second, more direct, path fromBGM affect to glycemic control may alsoexist. Findings from this study indicatethat youth-reported BGM affect is associ-ated with glycemic control, even whenfactors such as diabetes-specific familyconflict and quality of life are controlled.This may indicate a direct link betweenthe physiological effects of increased neg-ative affect (e.g., anger and guilt) and gly-cemic control, possibly mediated throughthe stress response. Various physiologicalstresses, such as anesthesia, myocardialinfarction, and diabetic ketoacidosis, areknown to promote counter-regulatoryhormonal release, inducing a state of rel-ative insulin resistance (23,24). Althoughthis “physiological link” between affect, astress response, and glycemic outcomeshas yet to be clearly delineated with re-spect to an ambulatory pediatric popula-tion with type 1 diabetes, stress andresulting hypercortisolemia have beenshown to have potential damaging effectson the immune system (25). Findingsfrom our study suggest the need for futureinvestigations of the potential direct andindirect paths from BGM affect to glyce-mic outcomes.

The opposite pathway between BGMaffect and glycemic outcomes is thathigher A1c values may lead to increasednegative affect. Youths with poorer glyce-mic control are likely to experience morefrequent out-of-range blood glucose val-ues on their meters, leaving them vulner-able to parental blame and shame andtheir own distress and disappointment.Hence, the negative affect experienced byboth youths and parents may not be the

cause of less optimal glycemic control,but rather the result.

Before conducting this study, we hy-pothesized that BGM affect would be re-lated to adherence to BGM (i.e., frequencyof BGM). However, we found no associa-tion between BGM affect and BGM fre-quency. Lack of a finding in this area maybe explained by the cross-sectional designof this study or by the self-reported natureof BGM frequency. A longitudinal analy-sis of BGM affect and how it relates toBGM adherence ascertained by down-loaded meter data would probably pro-v ide a bet te r eva lua t ion of th i shypothesized relationship. Further, itmay be that BGM affect is closely tied tothe results of monitoring (highs andlows), but not necessarily tied to the pro-cess or frequency of monitoring. Futurestudies can help clarify this relationship.

Discussion of how different groups ofyouth scored on the BGMC questionnaireis noteworthy. Female youths were morelikely to obtain higher scores, represent-ing more negative affect, on the BGMCquestionnaire than male youths. Like-wise, youths of lower SES scored higheron the BGMC questionnaire than youthsof higher SES. Notably, in our sample,SES tracked with minority status in amanner similar to that seen in previousresearch findings (26). Despite the statis-tically significant differences in BGMCsurvey scores by SES and sex, clinicallysignificant differences in BGMC surveyscores are more apparent at the extremesof the distribution. In particular, wefound a clinically significant difference of1 percentage point in A1c between youthswith BGMC scores of 15 or more andyouths with scores of 8 or 9.

When the BGMC questionnaires areused, several points should be consid-ered. First, the primary purpose of thisstudy was to document the psychometricproperties of the BGMC questionnaires.The explanations we offer about the asso-ciations among studied variables arebased on cross-sectional data, and longi-tudinal data are necessary to empiricallytest the processes involved. Second, wehave a small sample of youth who identi-fied themselves as ethnic minorities (n �15). Thus, careful interpretation and fur-ther investigation in minority samples areneeded.

In sum, the BGMC questionnaires arereliable and valid indicators of BGM affectfor youths and parents. These question-

naires are brief and easy to administer andcan be used clinically and in research set-tings to provide valuable information.Further, these questionnaires contributeto the overall understanding of factors as-sociated with glycemic control. In the fu-ture, it will be important to design studiesaimed to understand the complex rela-tionships between BGM affect, adher-ence, diabetes-specific family conflict,quality of life, and glycemic outcomes. Toprovide the best care for youths with type1 diabetes and their families, the natureand direction of these complex relation-ships need to be further investigated andbetter understood. Future studies shouldbe designed with this in mind. The BGMCquestionnaires can play a valuable role inthese investigative efforts.

Acknowledgments— This study was sup-ported by the National Institute of Diabetes,Digestive and Kidney Diseases (Grant DK-46887), the Charles H. Hood Foundation, andthe Katherine Adler Astrove Youth EducationFund.

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